Newly diagnosed 29 y/o woman, struggling to accept

I could have written the exact same post! I was self-diagnosed for a while, have done years of my own research, known it deep down probably my whole life, and finally got my diagnosis about a month ago. I'm still wrapping my head around it, even though I suspected it for so long, having the 'official' label feels odd. I keep going in-between 'my whole life now makes sense' and 'what if they misdiagnosed me'. Going over what I said during the assessment, what if they misunderstood what I meant, what if I misunderstood the questions, etc. I was also diagnosed with ADHD which doesn't help and adds another layer of identity confusion lol. I'm constantly analysing myself now and thinking, is this my Autism? Or ADHD? Or just a weird quirk I have? At the end of the day it probably doesn't matter, yet it feels so significant to me to understand better how it shows up in my day-to-day to make that connection with the diagnosis and accept it as a part of me. But also trying to remind myself that I am still me and a diagnosis does not change that!

I'm also often thinking about how differently my life could have gone if I was diagnosed earlier - almost like grieving a life I didn't get to live. I'm trying to be kinder to myself and allowing those feelings while acknowledging how difficult many things have been in my life, but also trying to reframe it as things that I have achieved in life despite not being understood. I found journalling really helpful to get those thoughts out of my system to avoid spiralling, and validating my own feelings. Also taking one step at a time and not expecting too much - being compassionate to myself because this is a big life event and it's ok to feel lots of conflicting feelings. Easier said than done though!! 

I also haven't told lots of people about my diagnosis yet. However my immediate circle knows and I have communicated with them that I am finding it difficult to wrap my head around the diagnosis which has helped in terms of managing expectations and needing a bit more time to myself these last few weeks. Also sharing bits of my thought process with them when I felt ready and hearing their perspective and reassurance. Also reading!!!!! I've read so much from others, especially the perspectives of women diagnosed as adults/later in life, and it was SO validating. Sometimes knowing that you're not alone in how you feel can already lift some of the burden. 

Hope this ramble makes sense! And that you're coping okay. It can be so difficult but I am a strong believer that everything in life will pass, and so will difficult feelings and emotions. 

I was burnout at the time e so was struggling to think completely straight. Hopefully you are in a better place. I have spent a lot of time analysing myself and all memories. A few things that might help:

1. You will think you have something, you are now diagnosed after all. This causes identity problems. It is hard but it will settle. You feel the right has been pulled out from under you. If you didn't see this, do you know yourself at all.

2. You will wonder if it is real. Did you exaggerate, did they make a mistake? Yes things are bit tough, but you can't really be different. You don't feel autistic. But of course no one feels autistic, you are just you, you have always been you. It is imposter syndrome. You can do stuff, if you really have to. And that's the point, you can do stuff, just it takes more effort.

3. You feel dispirited, because all that effort to fit in and you can't ever be normal. But that is the wrong framing. You are not defective, just different. But different has consequences. 

4. You now have permission to be kinder to yourself. Stop pushing so hard. Make some space. You don't have to prove stuff anymore. Lower your shoulders, sit up straight and breathe.

5. You will want to read up as much as you can. You won't get anyone to hold your hand, so this is a personal knowledge gaining thing. I went for it. Maybe a thousand hours plus of reading and discussions in the last 9 months. 

6. You will want to re-examine your past, why some things are hard, where you thoughts and ideas come from, what you like, don't like, what you want, etc. Depending on how your mind works, and if you have trauma, you may not just think about the past but relive it. This is tough and you may need some help or counselling.

7. You may find on looking at accommodations you have already self-discovered some and do them.

8. You may think about things you have misunderstood or messed up and feel grief or loss. I felt a huge sense of loss upon diagnosis, it was the main feeling by that dominated all else 

9. You will spend months going around then arrive not far off where you now are, but calmer, more assured and knowing yourself better. But to get there you have to take things on, possibly uncomfortable things. But don't just assume all the blame. Misunderstandings are 2-way things. 

10. Be aware of cognitive distortions, like black and white thinking and catastrophising. 

11. You may have issues knowing something and feeling something. It takes me ages to feel something is true rather than just know it. This is basically because your nervous system does not update at the same speed as your brain. It runs you emotions and it takes time for limbic system to catch up.

12. You can't think your way out of it. I've tried, a lot. Most of the feelings for me, anxiety, knit in chest/stomach, sleep issues, etc.are threat responses. This is all nervous system related. You can't think them away. They run underneath thinking. You update them by being calm. Then going things when you have capacity and it learning that no bad things happened.

13. Eat healthily ,drink and keep hydrated and rest. Avoid caffeine, nicotine and alcohol , or cut down, for a while. Try to be calm.

14. You hold the answer to you. Other people can't fill gaps for you. They can give you space, give moral support while you do things, praise, but you have to do things. Only you can know you.

15. It is ok to ask for help. This one may not apply, it depends on how your childhood was.

16. The objective of all of this is to allow you to know what you want, to be in a position to do it, to move forwards, but to do it all without burn out. You do not want that. Work with your nervous system, not against it. It is there to provide information, not control you. But it needs a little respect.

17. No two people are the same. If others have traits you don't, that does not invalidate your experience.

18. You will think ASD explains everything about your past. But eventually you'll realise:

• Some things were ASD.
• Some things were personality.
• Some were childhood.
• Some were burnout.
• Some were relationship dynamics.
• Some were just being human.

None of this matters though really. I could read whatever I liked from other people. While it helped me not feel alone, I still needed to know it for myself. I have used chatGPT as a virtual journal, recording what I was thinking. I has helped me spot patterns and behaviours. But I am alone. I also watch, log and analyse myself continuously. 

That'll do for now.

Welcome and congratulations. This is a good place to connect with others, when left with little support post diagnosis. I'm still processing mine a month in, relatively new at this also. There is a lot of support and honesty here which I've found refreshing. 

Congratulations on your diagnosis and welcome to the community!

Following diagnosis, it can be common for us to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about having an explanation for our difficulties, this can include working through a phase where we experience changing mixes of confusion, uncertainty, so-called "imposter syndrome", and/or (backward-focused) anger, frustration, grieving, and more. So please don't worry - it's normal! 

As for many others here, my own diagnosis turned out to be the start of a new journey, rather than providing solutions for my difficulties.

When your report comes through, it will hopefully include some suggestions and recommendations. In the meantime, theNAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

NAS - How you might feel after a diagnosis - includes perspectives from other autistics

NAS - Other advice covering post-diagnosis including:

• Talking about and disclosing your autism diagnosis
• Emotional support for family members after a diagnosis
• Formal support following an autism diagnosis
• What can I do if formal support is not offered or is not enough

Therapy (or counselling) is often recommended after a diagnosis, as a follow up action for your GP to arrange. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS.

Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

The Autistic Survival Guide to Therapy

Finally, I'll just mention a couple of books that I and others have found helpful early on in our post-diagnosis journeys:

Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

How to Be Autistic (free download currently available via this page)

Good morning from America Rayleigh,

I mostly felt relief once I was diagnosed, but also a bit of imposter syndrome since my psychiatrist said I was “borderline Autistic” when she delivered the news to me. Especially since I’ve heard other’s stories of how Autism has affected their lives (I have some minor sensory and communication issues, but there are some with way more pronounced issues), I’ve wondered if maybe I shouldn’t claim to be Autistic. But it’s a spectrum, some of us need more support than others.

Reading other people’s accounts did help, however, in understanding a little more deeply some more things that I hadn’t thought of that is part of my Autism. For example I came to the realization in the past year that showers are a little more difficult for me to handle than most people because of the sensory explosion. I probably wouldn’t have realized that if I didn’t read up on other people’s experiences with sensory difficulties.

So yeah, read. Read up on here and look up books by Autistic individuals. One good one that covers a lot of different experiences is “Unmasking Autism” by Devon Price, who is an Autistic author.

I hope you don’t mind me using grielief as a term for processing emotions from now on. That’s brilliant lol

Hi Rayleigh,
I had a similar experience a couple of years ago when I was assessed. Verbal confirmation in the session, a comment on a local group which may be running, or may have closed during Covid, and that was it. I have only recently seen comments on a report going to the GP and am chasing up whether there is such a thing for me and what it says.
On processing the diagnosis the term I have seen that best describes it is grielief - a mix of grief for all the things that could have been, and relief in knowing to better tackle the future.

Step 1 is about acknowledging that you now have additional information that provides a completely different perspective on your life, and that what you have been told before only applies from a different perspective.

Step 2 is about going easy on yourself and taking it one day at a time. I erred to relief and was happy to tell others (my flawed trust in other people) and am now looking for a new job (that story is more complex then I make it seem).

Step 3 is read and learn. Start with one topic e.g., senses, and read into how your senses may be different. You may be more or less sensitive to sounds, lights, touch etc. Also be aware that how you interpret the signals from your body may be different. I do not feel hot and cold properly, although I am obviously still affected by them. Consider hunger, thirst, etc.

Step 4 is that we are all still different. Being autistic isn't a one size thing. Whether called spiky profiles, or other terms, it means that all the parts come together differently for each of us. Just because one person experiences the world in a certain way does not mean that you should too. This will also help if you get an attack of imposter syndrome (that you suddenly feel that you cannot be autistic because xxxx).

If you have questions, then reach out to the group and ask. Chances are that someone may have a similar experience.